As (mostly) usual, check out the Song of the Week page for an awesome recommendation from a lovely spoonie friend!
Dear Friend, Acquaintance, Family Member, Random Person Staring at me with my Walker, or any other person who judges me without knowing anything about me and/or my condition/s and therefore should have no opinion on my medical situation,
This letter is for you.
I usually try to steer clear of you, as negativity is not permitted in my bubble of self care, but alas, you continually attempt to pop my beautiful pink bubble.
I used to think it was easy to avoid you and others like you, but as my medical conditions make it more challenging to survive without the need of mobility or accessibility aids in public and my life revolves around the illnesses more than anything else, we seem to be at an impasse.
I have several chronic, autoimmue, life-altering illnesses, whether you believe they’re real or not. And they are, just to be clear, as years of research and medical documentation support their existence (and I’m not on all of these medications for nothing). These conditions, illnesses, horrible-things-that-have-happened-to-me are in no way fake, misleading, or caused by anything I have done. I do not choose to be ill and miss out on work, bearing children, or vacations with my husband. I do not want to use a cane or walker around the house or in public (even if they are pretty cute), because in reality, it’s all a huge inconvenience. I do not want to spend hours on the phone arguing with insurance companies, employee benefits, or disability services. I don’t want to be in agony over the sound of birds chirping, motorcycles starting, or my husband trying to hug me. This is not a fun life. But it is my life.
This is my life, and it is not yours. And just because it does not make sense to you does not make it any less legitimate. These are illnesses I didn’t even know existed until they happened to me. But now that I know they do, I am a champion for these causes and for the people’s lives they’ve affected. I do not write this letter for your benefit or mine, I write it for theirs. I write this for my friends around the globe who encounter naysayers and hurtful doubters who make their already difficult lives that much harder. Nobody chooses to live in pain, but you are actively choosing to be ignorant to it.
I’ve heard you say things like “just push through it,” or “why are you in bed still?” or “if you just keep moving,” or one of my all time favourites “if you just take this one supplement your life will be completely different” which shows me just how little you know about our illnesses. And if you know that little about them, you are in no position to comment on how we survive them. If you think that one lap around the dog park is not enough to wear us out for days, you have no idea what we’re dealing with.
I’m sorry if this is coming off harsher than I had intended, but enough is enough. If you cannot stick by us, support us, encourage us, and just generally try to understand what we’re going through, then we’re going to have to cut ties here.
Speaking for myself, I cannot push through these exchanges anymore. I am begging for compassion, and if you are unable to provide that, there is nothing left to say.
Thank you, our friends and family who have shown us unending support and love. It means more to us than we can say.
As usual with a new post, here is the new Song of the Week to empower you and give you strength!
I have to be honest here, when writing these “how to’s” I feel a bit like a fraud! Who am I to tell other people how to do anything? I am no expert in any sense of the word. I am just a girl living with these illnesses, trying to help people whenever and wherever I can. I do have a pretty successful marriage that I believe is in large part due to my amazing husband. That being said, here is how we make it work!
Honesty is key. Both partners need to be straight up with one another at all times. If you’re having a bad (or good) day, they need to know what to expect. If you aren’t up to outings, let them know! Pushing yourself will only hurt you both. Keep it honest about the realities of your conditions. And try to always let each other know what you need. Don’t hold things in until you burst.
Education is Important for Support and Understanding. Chronic pain workshop and education classes can be outstandingly helpful for both parties. Workshops together and separately are vital for understanding. When both of you understand the illnesses and treatment plans you can better work towards a sustainable and healthy future.
Support Groups are Supportive. Not just for the chronic pain warrior, but for the caregivers as well. Caregivers hold a lot on their plate. They feel like they always need to be strong and able to help, but they need help too! It is not easy for them to watch their loved one in so much pain and feel utterly helpless about it. It is important for them to attend Caregiver Groups so they feel supported as well.
Keep the Intimacy Alive! Spouses can feel like nurses if their time is spent arranging pillows, giving medications, and turning on heating pads. It is important to still do “couple things” when you’re up for it! Dress up and go on a date, have a picnic outside, have sexy time! These things are absolutely vital. Orgasms are good for pain relief! That’s an actual fact! Sex and ArthritisSex and Chronic Pain give some helpful hints when discussing sex in the realm of chronic pain. I know it’s a personal topic and varies from situation to situation.
Keep up with the Inside Jokes and Netflix Binges! My husband and I have really gotten closer throughout these illnesses. I think it’s hard not to, when it’s usually just us here dealing with the day-to-day of the symptoms and realities. Because of this, we have many inside jokes and our own little language basically. It brings us closer as a couple and strengthens our bond. We have a couple things on Netflix we’ve rewatched about a million times (Bo Burnham- What) and enjoy finding new shows to binge on!
Remember to Appreciate One Another. This is probably the most important. Just be appreciative of what each of you brings to the table. If your spouse takes great care of you, thank him/her. If you book the appointments and are there for morale boost, that’s an important job too! You’re a team. A damn good one, too. Please and Thank You’s are still the magic words.
Find things to do That Aren’t Illness Related. You can never really take a break from these illnesses. They’re chronic. And we all know what chronic means (thumbs down). But if you like to play computer or video games to take your mind off of the pain, or can beat each other at Words With Friends, those are cute options that keep you connected in a non-illness way!
I hope this was even a little bit helpful! If you have any questions please email me at firstname.lastname@example.org.
*Disclaimer- Bo might not be for everyone. He is a comedian and can be offensive depending on your preferences and tastes*
This past week I have been fortunate enough to be surrounded by friends and family. People that love me, care for me, and take care of me. Friends that let me (or tell me) to sit when I need to, rest if I’m tired, and eat with my medications.
Having these people in my life reminds me that nobody fights alone. We aren’t meant to. It’s biology. It’s evolution. It’s in our DNA. We need each other! “We are all just walking each other home– Ram Dass.”
Community can mean a couple of different things. It can mean a group of people who live in the same vicinity or people who share a common characteristic or trait. I am so lucky to have amazing communities in accordance with both definitions!
The people who live around me, that I’m in constant contact with, are incredibly supportive of my needs. They may not completely understand the challenges I live with, but are always ready to grab my walker/cane, pick up things I can’t, arrange my pillows in a comfortable way, and offer their hand to assist my balance. All of these seemingly little gestures are more helpful and moving than anyone could ever know.
My spoonie community, the people who share a common characteristic of chronic illnesses, is without a doubt the greatest blessing I never saw coming. I hadn’t heard the word spoonie until I began my Tumblr blog and now I don’t know how I ever made it so far without this tribe. I have learned so much about my illnesses and myself through the spooniverse and I could not be more grateful. Sharing tricks of the trade and support from those who understand has been immeasurably instrumental in where I am today.
Sometimes these communities overlap, like when I have friends and family members who are also battling chronic illnesses. Like my friend who was over this week who has suspected arthritis! Or my parents and grandparents who suffer with arthritis, ankylosing spondylitis, degenerative disc disease, and others.
Look around you right now (assuming you’re not alone), and you will find people who are fighting battles you don’t know about. Talk to them, get to know them, they are your community. Your tribe. And even if you don’t live with them, you might have common characteristics or traits to bond over. Nobody can walk this road alone. It’s much more fun to have someone to chat with along the way.
As usual on Mondays (or sometimes Tuesdays, and rarely Wednesdays), please check out the Song of the Week page for some uplifting and feel good tunes! You get a special two-for-one deal today!
I titled today’s post “The Bright-ish Side” because sometimes the other side, or what some people refer to as The Bright Side, is not always all that bright. Sometimes it’s a touch bright-er but that sounds a tad too optimistic and a little misleading. Often what I have found is that the side is more of a shade of bright-ish than bright. But nevertheless, it is the better option.
Today started rather happily for me and then quickly went from happy to not-so-happy. When I am feeling not-so-happy (or like today, various shades of angry/frustrated/sad) I try extra hard to find the bright-ish side. So, here it goes:
I cleaned the apartment, took my pup for a walk, chatted with a friend and had a wonderful few hours of relatively pain free (as pain free as chronic pain warriors get) enjoyment. When the pain decided to return full force I became frustrated. It is so maddening, having to pay for a few hours of happiness with unrelenting pain. I compared this situation to an overprotective father waiting up for his daughter who is past curfew. “What did you think you were doing going out and enjoying your life! You know better than to be happy! Enjoy being grounded for a week!”
On the bright-ish side, I got to leave the house and enjoy the sun on my face. Those hours of joy cannot be taken away, even if the pain tries to do just that. I have photographic proof that I enjoyed (at least parts of) today.
My husband sat down to do our taxes and realized a couple of things related to my disability and work forms are not accessible online so I will need to phone for them. I began panicking and my anxiety became overwhelming. I can not think of two phone calls I would like to make less.
On the bright-ish side, I have a husband to help with the taxes and friends to talk me down when I can feel a panic attack coming on.
There are times I am sure that I can not survive one more day in this much pain.
On the bright-ish side, I know tomorrow is coming and there is a chance it could be better than today.
Sometimes I feel utterly empty and like I am as useless as they come.
On the bright-ish side, I have about a hundred people who will tell me that is not true.
There are times I am scared that nothing will make sense ever again.
On the bright-ish side, does anything ever really make sense? 😉
On the absolute bright side, I have amazing supports in all of you. I am more grateful to you than I can express. You are the bright side.
And if you ever need help finding the bright-ish side, I’m your girl. Practice makes perfect.
I feel like I’ve been in a little writing rut as of late. So many things have been happening and I didn’t know if I should share them, or even how to go about stating the mile-a-minute thoughts in an eloquent way.
Nevertheless, I have things to say so I’m going to go ahead and just say them.
Firstly, check out the Song of the Week section for a pick-me-up chosen by my husband! If you like it, go ahead and comment or send me an email at email@example.com!
In effort to speed through the changes that have been happening lately, I will bullet point what I can!
I got kicked off of my Long Term Disability Benefits but am fighting it! I have heard from a bunch of other Spoonie folks who unfortunately have been in this situation and I thank you for your words of support!
We are MOVING! And by moving, I mean we get the keys tomorrow! We are moving from this three floor townhouse into a beautiful apartment building where we are on the FIRST floor with easy access to the doors, laundry, and lounge room. There is also an indoor saltwater pool on the premises! So excited! But as you fellow spoonies know, this is an exhausting and extremely taxing process on our bodies. All for the best, though!
My toe surgery is over but now I feel like there has been a complication. I revisit the surgeon next week so I’ll keep you posted on that.
Now on to the real post….
We have been packing for a while now, clearing out the house of all the things we no longer need or will have room for in the new place, and it’s been a process to say the least. It’s always hard to pack when you’re still living in the place you’re packing! Some things are easy, like I could pack two out of my three drawers of panties (I know, it’s out of hand), but some things were harder to box up. The hardest being my gigantic makeup bag.
If you’ve been following my journey for a while I’m sure you’re no stranger to my relentless selfie taking and posting. As obnoxious as it may seem to my family (I’m looking at you, Michael), it is how I/we chronicle our days/hospital visits/weird reactions or symptoms/new makeup techniques/let the world see how gorgeous we are. My husband can point to the exact selfie spot before and after I bought my contour kit.
These illnesses take so much from us; more than anyone could ever understand who isn’t in this position themselves. Dying my hair, piercing my ears/nose, getting new tattoos, buying cute leggings/pajamas, and doing our makeup all fancy is how we control our bodies when all other control has been taken away. I can not control when my stomach decides it didn’t like what I ate. I can not control the weight gain from meds when my back makes exercise near impossible. I can’t control when the misophonia will hate a particular sound. I can’t control what textures are tolerable. I can’t control what part of my body will hurt when or how to make it stop. Our lives seem to have been ripped apart before we even knew what was happening.
It makes sense that I’d hide behind these things. And I do. I completely admit it. Before my body got torn apart I was tattoo free with limited piercings and natural blonde hair. I currently am sporting 7 tattoos (2 more happening next month!), 11 piercings and purple hair. I also have more makeup than one person could think necessary. I hide my up-and-coming double chin with clever contour tricks and hide the pain behind killer smokey eyes. It’s the mask I show to the world. But it’s packed in a box now. Purposefully.
I feel the hairs on the back of my neck stand straight up as I think about leaving the house tomorrow with my makeup packed in a box I can’t identify. I feel the anxiety mounting higher and millions of butterflies in my stomach (not the lovey ones). I feel panicked. But I will brave the world tomorrow, fresh faced and ready. Not hiding, but open and prepared to show my true self as I go from one appointment straight to pick up the keys from our new place!
Who knows, this may just be the best thing for me. A little break up from my makeup. Even if it is anxiety inducing, it is good to let my skin breathe every once in a while, right? But don’t fret, my pets, I am in no way breaking up with my makeup for anywhere close to good. As soon as that box is unpacked I’ll be back to my selfie taking self in no time!
Do you have any things like this? What is your mask?
I wish I had come up with this term. I wish I could take credit for this. But I can’t. There was a post going around for a while with a name attached but I am unable to locate it currently. Nevertheless, it is a real thing.
I’ve written before about how absolutely angry I get because the pain won’t let me do things I am desperate to do. I want to scream and throw things and smash walls but I can’t do those things because I am trapped inside this stupid, useless, broken body. It is absolutely maddening and all I want is to throw a ginormous temper tantrum because it’s not fair at all! Read More
Good Afternoon Spoonies/Spoonie Supporters/Friends Who Stumbled Across My Page!
Here are some moments I’ve experienced and maybe you have, too!
That moment when you wake up in agony but can’t move to get your medication so you lay silently with tears streaming down your face until someone wakes up to get them for you or you gain the strength to reach your medicine dispenser.Read More
Sometimes there are no words available for what you’re feeling.
I have a hard time expressing myself occasionally, especially with the overwhelming emotions that come with chronic illnesses. I can be happy, sad, worried, anxious, excited, and full of despair all at the same time. As you can see, this gets rather complicated when someone asks “how are you feeling today?” There’s no straightforward answer to that. We all, I assume, just say “fine” and move on. But are we ever really fine?Read More
Sometimes life is good and sometimes life is bad. And sometimes it seems like it’s bad a whole lot longer than it’s good. That’s okay. It’s part of being alive. And the long, horrible, bad times make the not-so-bad times that much better. Read More